Week 3: Mucositis - when mouth ulcers attack!

How my mouth felt this week...

One of the things I'm learning about cancer is that you need to adapt and be ready (mentally & emotionally) for the unexpected. Of course, this is almost impossible to do immediately (and here I'm talking about timescales of days), but, taking an ecological analogy, resilience is key. In this post I’m going to therefore reflect on the tough start of Week 3, and my realisation, again, that the radiotherapy therapy (RT) is going to be test myself and David to the extreme. Can’t remember where I read this quote, but radiotherapy of the head and neck is all pain, all gain.

So what happened? Last Sunday, I could feel my gums becoming tingly. And as I’m very prone to mouth ulcers, I knew that this meant I was in for a treat. But I didn’t bargain on them being a Christmas-level treat!! Overnight, 15+ ulcers appeared along the right side of the mouth (I lost count as ulcers merged into each other), across my tongue, and even on my lips. Some of the ulcers were huge, sticking out over 5mm, meaning that I wasn't able to close my jaw, as they would get crushed by my back teeth. The ulcers at the front my mouth and on my bottom lip meant that I couldn’t move my lips, which meant that my mouth was permanently open, tense but immovable. I also couldn’t speak (and still can’t really), which, well, I’ll leave that to David to comment on ;-)

And these are alongside the increasing rawness along my throat, tonsils and roof of mouth, from the radiation burns that are starting to accumulate, and increasing thickness of my saliva, which is pretty gross. Together, these changes are called mucositis, one of the least desirable side effects of radiotherapy.

Epithelial cells line the gastro-intestinal tract (from the mouth to the anus) and these are easily broken down by both radiation and chemotherapy. This means that mucosal tissues or lining are much more susceptible to infection and ulcers. The oral mucosa is especially vulnerable to chemoradiation, hence the classic symptoms I’ve been experiencing this week. The list of impacts is scary; I hope I only get a fraction of those. But this is nice video summary.

I won’t lie; it is very distressing. But the consequences of not acting on these effects are serious too. If I can’t eat and drink (and believe me, even swallowing water was incredibly painful), then I lose weight (& motivation), and dehydrate. From a radiation therapy point of view, this could lead to my mask not fitting and therefore compromising the targeting of the radiation beams. My mouth is more prone to infection and sepsis, which again, could have serious implications for future treatment. I fully appreciate now why the gastric tube is necessary, as these impacts will get worse; I’m not even half way through RT treatment yet, and my oncologist is very candid about future struggles.

This graph is unfortunately not about gay accumulation by day! It’s about accumulation of radiation, which is measured in Grays (Gy). Gy is the international system (SI) unit of radiation dose expressed in terms of absorbed energy per unit mass of tissue.

Treatment recommends 70 Gy total, to be delivered in 2 Gy packets, hence the 35 day / 7 week treatment. The red line is now. Look at how much more radiation I need to get (😳).

So to deal with all of this, daily life has had to change quite dramatically.

I’ve put myself on a diet where I need to gain weight. Out goes all my oat-based milks (stop sniggering) and in comes full fat cream to be added to EVERYTHING! I’m also not able to tolerate tomatoes or anything else acidic, so basically every second meal choice needs to change (😭). Chocolate has also gone, as too has yoghurt In come things that are moist and often sauce based. I’m basically returning to food stuffs either a 9-month or a 90-year old are most likely to eat and drink.

Oh, and I have to drink these very gloopy, high-cal, high-protein energy drinks. When the time comes that I am no longer able to eat by mouth, these are the drinks that I’ll inject straight into my stomach. Nice.

The time it takes to eat is astonishing. Thursday in the chemo ward, it took me almost 45 minutes to eat one banana. Yesterday it took me 1h 40 mins to eat my porridge.

One part of me still thinks, who has time to do this shit, and then I remember, I do. All the time in the world.

Drug routine

My daily routine in drugs and exercises is becoming quite impressive. On Tuesday I was given morphine to take 6 times a day, spread out every over 4h. This has undoubtedly helped with the pain overall, but the specific pain from the ulcers has been helped hugely by having regular mouth washes of salty-water. After my Thursday chemo session I need to take anti-emetics and steroids. And because of all of these, constipation becomes a reality and laxatives are required to be taken twice daily. But, I also acknowledge that many of my other friends have much harder drug regimes to follow for various reasons, and for longer periods of time. I just now appreciate a little bit more what you have to go through.

Lilly and I now share a drug cupboard – she has Chronic Kidney Disease, and also needs medicine and low-protein food every day.

Head Neck exercise routine

I realise now that the exercises for my neck and mouth are hugely important so that I can keep swallowing; I honestly hadn’t appreciated how complex swallowing actually is (yeah, yeah, ironic for a gay man, I know!!), and how easily this simple bodily function can be lost. I do these exercises 5 times a day, every day, so the amount of time they take is not insubstantial!

The upshot from this, and this has been a bit of a revelation, is that most of my time every day, on top of treatment, is taking care of myself so that treatment and recovery can be more effective. It essentially becomes almost a full time job really, because the increasing tiredness and confusion that comes with the treatments also need to be factored in.

I can’t begin to tell you how many times I have gone between writing this post and the cupboard where all the medicine are now stored, rather than just moving the laptop to the kitchen counter (🤦🏼). And of course, I can only do this with David in the background and foreground doing all the cooking, the cleaning and generally badgering me along to make sure I do everything I’m meant to do :-)

And this morning, I think this is where I do have resilience built in. The chemotherapy has barely given me any side effects this week, thank goodness. And the emergency mouth care I’ve instigated means that at least today, the pain has subsided substantially. Enough I think for me to do my first proper run (isolated of course) since before I started treatment.